James and I began this blog at the very beginning of our pregnancy to share and update our new adventures as we became pregnant and start the new season of parenthood. Sixteen weeks into pregnancy, I had to go into surgery to ensure our son would not come too early and shortly after, we found out Wyatt has Congenital Diaphragmatic Hernia (CDH). This is our humble attempt at being transparent and hopefully sharing the joys and love of Christ through this roller coaster ride we're on.

Thursday, February 13, 2014

Dear Feeding Tube, I hate you! Love Always, Casey





It's a LOVE... HATE... LOVE... HATE .....


Oh, I don't know... What day is it? What part of the day is it? Do I love it or do I hate it? What am I talking about????? 

Wyatt's G-tube (feeding tube). It's Feeding Tube Awareness Week. I wanted to blog last year this week but did not. I never got a round to it. Here goes my attempt to inform, teach and maybe just give you a glimpse into what it's like to have a kiddo on a feeding tube. :-) 


Just to recap, Wyatt started with an NG tube (Nasogastric intubation). This was a small rubbery tube inserted through the nose, down the back of the throat and can dump into the stomach or lower at the opening of the intestines... and and maybe further? I don't know really, I just know those two because that's what we experienced with Wyatt. 

Wyatt with his NG tube (the yellow one) at about 2 months old. He was still in the NICU at this point. 


Wyatt after having his g-tube placed. 



Gosh, it looks so big on his little belly! 


I can't remember when Wyatt actually got his NG tube, day 1 or day 5 or later. That first week or so is a blur now. He did have what they called TPN for nutrition for a long while. The NG tube has pros and cons. Here's a short list. I'm sure there are many more and medical reasons on both sides that I'm not listing and I don't know about but this is just my personal experience and opinion. :-) 

PROS: It's nonsurgical, it's more temporary, the child is most likely taking in some food/milk by mouth and this is just the get the rest in.

CONS: It is temporary, which means it can come out easily and depending on where it needs to "dump" depends on how easy or hard it can be to place back in. When Wyatt needed his to end at the opening of his intestines, the NP's had to listen and push a puff of air through and even then would usually call for an X-ray to make sure. With the NG tube, it needed to be taped in place to his face. I don't know about you, but I like to look at Wyatt's face, all of it and having these big pieces of tape all over! 




We discussed Wyatt coming home with the NG tube with a few different doctors, NPs and nurses, I had mixed thoughts about him coming home with the NG tube and the risk that can go with it. Looking back now, I'm happy we didn't. I was just so hopeful that he'd begin drinking from a bottle and we wouldn't need to go the surgical route. But...


Wyatt ended up having surgery to place a g-tube or g-button (gastrostomy tube), whichever you'd like to call it, around 100 days of life (and in the NICU). I don't know if I've ever been so scared in my entire life, sending my baby boy back into surgery. I wanted to hold his hand the whole way. I did not want him on the vent. Anyway, back to feeding tubes. A Mic-Key Button was placed. 




There was some talk amongst the doctors about Wyatt having a G-J tube (gastrostomy-jejunostomy tube) and/or a Nissin/Fundoplication done. I am thankful neither of these happened. 


G-J tube: From my limited understanding of this, it's just like a regular g-tube placement but there is a tube on the inside that dumps into the intestines and basically skips the stomach all together. I cannot even imagine what that must feel like, always having an empty stomach. It can't be comfortable. But I also know that this is absolutely necessary for growth, development and even survival. This was not the case for Wyatt. 

Nissin/Fundo: Basically, part of the stomach is surgically wrapped around the and it prevents the child/person from refluxing/throwing up, ever.... not just when eating and drinking are concerned but EVER. Not when the kid is sick with a bug or food poisoning but always preventing throw up. And from what I've heard from parents who kiddos have this, it's gut wrenching to watch their kid try and try to vomit and not be able to. A reason to have this done is to keep the person from aspirating (when food/drink enters the lungs). This can be very dangerous. 



Wyatt had a swallow study done when he was about 6 months old before we began trying purees with him. The study showed, even while he was refluxing like crazy, he did not aspirate. Praise the Lord! 


About a month or so ago, I called the surgery team at Children's because Wyatt's button just kept leaking and was wondering if there was anything we could do. I asked about a different kind of button and they said it's worth a try. What works for one, might or might not work for another. So, we ordered the new one and I do like it more. It's softer, lower profile but it does still leak. Oh well, I guess we're a case just that leaks. Lots and lots of button pads needed. :-) 

Here is a comparison of the two:

Wyatt now has the one on the left. 


Here's a video of what a typical feeding looks like. Sometimes Wyatt reads books, plays with puzzles or just sits with me and we sing or just chat. :-) 



I do this about 6 times a day.  Sometimes I give him a water flush.  We also feed him by mouth a few times a day- sometimes successful and sometimes not so much.  Wyatt also gets connected to the pump once he falls asleep for about 3 hours.  

Just in case this is your first time reading our story or you missed a post or something, Wyatt is fed a blended diet. Instead a purely formula, I daily blend up food and that's what his main source of nutrition comes from. 


Wyatt is eating purees and drinking liquids by mouth. It's a big roller coaster ride- some good days and some bad days. Even on the best days, he still does not eat or drink near enough to not have to use his button. It's so frustrating. I just want him to not have this struggle, ya know. And notice that he's eating purees. He is still learning how to take in some crackers and move it around his mouth without gagging and throwing up every. single. thing in his stomach. It's such a tough balance, pushing him to try and learn and wanting him to keep it all down. He needs those calories. Every single calorie counts, still. He also still needs quite a few teeth to grow in. They're coming but it's slow going. If only there were a magic food or blend that would make his teeth come in more quickly! 


So, I've got this tubie momma friend, Robyn, that I go to for advice, ideas, support, encouragement, to vent, to share and I can only hope be all these things as well. She's one of a small group that I trust to really "get it". I've also got some really good friends that are there for me in prayer, support and encouragement as well. And they really engage and listen and support and come close to getting it, as much as they can and I am SO thankful for each of them for being there for me. God really has blessed me with some amazing friends to walk with. :-)

Robyn blogged yesterday about her sweet tubie son, Asher. God has gifted her writing and part of what she wrote, explains it better than I ever could with more grace than I could. So, I've copied and pasted her frequently asked questions portion. To read the entire blog entry, click here


_____________________________________________

Here are my top 4 things I would NOT recommend asking or saying to a mother of a child with a feeding issue or feeding tube:


1. When will he/she get the feeding tube out? 

This is #1 on this list for a reason! This is the golden question I would love to know the answer to myself! Most of the time the tube is not in by choice, and so it's up the the child, when they decide they want to eat/drink. Sometimes, it's a medical issue and that is up to doctors. But, often, it's a painful waiting game. To me, asking this question just piles on to the many times I've asked and hoped for that answer myself. 


2. Will he/she struggle with eating his/her whole life?

Again, we hope not. We don't know. This is just not a productive, sensitive question…no matter how well meaning. 


3. My kid is a picky eater too. It's just how toddlers are. 

It's just not the same with tube fed kids. Kids with tubes and feeding issues may be toddlers, and that may play a role. But it just can't be compared to a child who knows how to regulate their eating/drinking on their own and who is growing at a normal, healthy rate because of it. Many tube fed kids missed out on learning how to recognize, and regulate their hunger as young babies. So, they are having to learn about that in a different, unnatural way. 


4. Giving advice. 

This is a very tricky area. I would say proceed with caution on this one. As in, don't go there if you can help it. It would be like me giving advice to a lion tamer. I just don't know anything about that except what I've read or seen, which is nothing like the real experience, I'm sure. (And, let's be honest, I really haven't read or seen much on that!!) 



What do I recommend you say/ask to parents you know are dealing with a feeding tube or feeding issue and you are wanting to know more about it? Glad you asked! 

1. How is he/she doing? (Just in general, let the parent decide to go into feeding details.)


2. What is he/she working on in therapy? 


3. How is eating/drinking going this week? 


4. How can I pray for you and your child?


___________________________________________




It's me, I'm back. I told you she's good and gracious with her words. :-) 


A day in the life of Wyatt? It's ever changing. One day can almost feel normal and the next I wonder why we even bothered leaving the bathtub or why bother washing the floors or clothes when he's just going to throw up and throw up some more.... and more. 


I try not to let life revolve around feeding Wyatt but I'll be really honest when I say, our lives do revolve around feeding Wyatt. It's the gift God has blessed us with. I mean that when I say "gift" and "blessed" because Wyatt is a precious gift and we are so very blessed by him. No, it's not always easy to be a momma of a tubie kid who refluxes and throws up and has therapy 2-3 times a week but I don't think I'd have it any other way. I cherish every milestone and moment we have with him. I dream of the day we can go to Chick-fil-A and order a kids meal, Wyatt eats it and I let him up to go play and then come back and trade in his toy for some ice cream. And the entire time, I don't worry one single moment about him gagging, choking or throwing up. 


I claim victory over that day. I claim victory over the day Wyatt eats and drinks enough food to not have to use his tube once. I claim victory over the day I call the medical supply company and ask them to never make another delivery again. I claim victory over the day we can say thank you and goodbye to our GI doctor. I claim victory over the day we take Wyatt's g-button out and throw it in the trash and NEVER LOOK BACK! I know these days are coming. I don't know when they will be but I know God is faithful and keeps His promises. I stand firm in His word and will work diligently to help Wyatt claim these victories as well. 


This journey is different for all of us but I hope this gives you some insight into what it's like to have a tubie or my tubie at least. :-) 


Happy Feeding Tube Awareness Week!

2 comments:

  1. Casey....
    "Wyatt started with an NG tube (Nasogastric intubation). This was a small rubbery tube inserted through the nose, down the back of the throat and can dump into the stomach or lower at the opening of the intestines... and maybe further?" Interesting. I did not know that about the NG tube!! It is a small rubbery tube inserted through the nose, down the back of the throat and can dump into the stomach or lower at the opening of the intestines....? ;)
    "I don't know about you, but I like to look at Wyatt's face, all of it and having these big pieces of tape all over!". I second that!! ;-D
    I have a little CDH Blogging Buddy who had the Nissin/Fundo procedure done. And, while I'm not criticizing their decision, I couldn't imagine never being able to vomit again. I just couldn't imagine. When you are sick with the stomach flu, as nasty as it is, vomiting actually helps make your tummy feel better!! ;)
    I am praying that Wyatt's feeding tube will stop leaking!! Because, seriously. That would be annoying!! ;)
    The video was quite educational for someone like me who has never seen a tubie be "fed"!! ;-D
    I love what your Friend wrote!! Very good. Very, very, very good!! ;-D
    "I try not to let life revolve around feeding Wyatt but I'll be really honest when I say, our lives do revolve around feeding Wyatt. It's the gift God has blessed us with. I mean that when I say "gift" and "blessed" because Wyatt is a precious gift and we are so very blessed by him. No, it's not always easy to be a momma of a tubie kid who refluxes and throws up and has therapy 2-3 times a week but I don't think I'd have it any other way. I cherish every milestone and moment we have with him. I dream of the day we can go to Chick-fil-A and order a kids meal, Wyatt eats it and I let him up to go play and then come back and trade in his toy for some ice cream. And the entire time, I don't worry one single moment about him gagging, choking or throwing up. I claim victory over that day. I claim victory over the day Wyatt eats and drinks enough food to not have to use his tube once. I claim victory over the day I call the medical supply company and ask them to never make another delivery again. I claim victory over the day we can say thank you and goodbye to our GI doctor. I claim victory over the day we take Wyatt's g-button out and throw it in the trash and NEVER LOOK BACK! I know these days are coming. I don't know when they will be but I know God is faithful and keeps His promises. I stand firm in His word and will work diligently to help Wyatt claim these victories as well.". I am praying that Wyatt learn how to eat "real" foods as he should!! Do not lose hope, Friend!! I have read of some CDH Kids who eventually lost their feeding tubes!! It can happen with Wyatt, right? ;)
    Sorry. Long comment!! ;-}
    --Raelyn





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  2. Casey....
    It has been one month since you last posted on this Blog!! I am missing Wyatt, my Kindred Spirit CDH Buddy!! Life has been seemingly busy for me lately. I wrote a fictional children’s story for March which was posted on my Blog, "Minuscule is good!". We have been watching my two-year old niece, "Amethyst", once a week. How are you, Friend?
    -–Raelyn

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